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Author
Topic: The habit of living like time's running out? (Read 3269 times)

Welcome to my first forum thread. Might as well jump in with both feet.

I have been poz for over 24 years. I was diagnosed in the bleak days of 1989 when HIV was considered a fatal condition. While my CD4s at initial diagnosis weren't horrible -- 330 -- in those days that was a pretty grim number. I've been around the block with med regimens, struggled with up and down CD4s and VL, had clinical AIDS diagnoses, and skirted a few health disasters, but here I am all these years later leading a pretty healthy productive life thanks to clinical trials and salvage therapy. In my community I am regarded as a picture of health.

The problem? Ever since the beginning I've lived with that sense of fatality around my HIV infection. The feeling that my time is limited or running out. Of course there were times when that was valid, but what about now? Everyone knows how successful current treatments are, but am I wrong to let go of my fear of HIV and its effects, or am I wise to remain wary? Regardless of the success of treatments, I am aware of those insidious effects of long-term HIV exposure and infection, not to mention drug side effects. How much attention and concern do I give them?

I readily admit there are great benefits in learning to live for today. It can be an essential coping and survival tool. But at what point does it hold me back?

To cite personal examples, I changed the course of my life and career more than once back in those early days because I didn't have the time or resources or sustained health to pursue them. Now I live with some regret of missed opportunities. (If I had only known…) As another example, I went on long-term disability due to health concerns and made a big life-changing move, assuming I was in my early retirement with a very few golden years left. That was 14 years ago. Now I'm stuck in the tender trap of LTD. Granted it has enabled me to do good things and contribute to my community, but the associated guilt and stigma it weigh on me. It's not a free ride by any means.

More concerning, I am now in my early 50s. I have another decade before the usual retirement age, at which point my financial picture will change drastically. I never in 24 years years imagined living to my senior years, and honestly, I still have a hard time believing it. I have not planned or prepared for it. I gave up 401k's and retirement savings a long time ago.

So…all of this is to solicit people's views. Am I just in a relative hypochondriac mode by letting the fact of HIV rule and affect my life too much? Do I need to get a grip and just put HIV as out of the picture as possible? Have I let being poz become too much a part of who I am? Bottom line: when is it a valid concern and when is it an excuse?

I guess there are some unanswered questions. Are there things (or is there a thing) you still want to do you haven't done yet? What are your actual physical limitations? Disabilities? What can you see yourself sustaining?

I guess without really knowing you I don't know how to answer. But, welcome! Look forward to hearing more.

Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I ask myself many of the same questions. It's not easy and not even a good idea to forget our past. I doubt it would even be possible.Attention and concern about long term affects with HIV comes with the territory. I had a pretty good run health wise but these past 8 years or so have gotten more challenging. Age plays a role but the combination of aging with long-term HIV can create some unexpected twists and turns. Got to take them as they come.

I don't see a downside in living in the moment. I'm not sure what you mean when you say "at what point does it hold me back". (in that paragraph)

Yes, personal finances and early career goals can be altered. Frustrating!! While I wasn't held back living my dream as far as work was concerned early on, my abilities went south hitting middle age much more than the norm. This changed my outlook on what retirement will look like. Not very secure although I still feel more fortunate than many. Guess expectations and reality don't always agree.

A valid concern or excuse? That's a tough one. I guess I just try to do my best along the way but still have concerns too. Not every day is a good day and my health plays a major role.

Welcome, Moxie. I was diagnosed about the same time you were. I think that behaviors that served us back them don't always serve us well today. Back there it was more about survival. Coping with the deaths of so many friends. Trying to have hope, when there were no viable medications.

While necessary at one time, these behaviors are very hard to un-learn when they outlive their usefulness. There is no easy answer to the question of whether being poz is a valid reason, or an excuse. The first step is becoming aware of your situation, your behaviors, and your decisions. Only you can know if you feel you are holding yourself back. But if you are asking the question, then I suspect there is something you want to change.

Regards,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

I agree, living like the end is near is how I felt for a long time. sometimes still do, also felt that I missed allot of opportunities good health might have let my life been more fulfilling ?

Maybe someone will put together a movie story line from our experiences ? What we see as misfortune some one else might perceive as overcoming adversity ?

Sorry just thought it might be worth kicking around ; I came here to post that idea but living like time is running out might be a good title ?

I m sure thrush shingles skin legions and other opportunistic infections are common with people who have been HIV positive for as long as we have been. I had been hospitalized a few times in the nineties with life threatening illnesses.

Wow. Thank you all so much for your replies. I was worried I'd hear nothing but crickets, and when I wen to bed last night that seemed to be the case. But all your replies so far have me so encouraged. Thank you! You are all beautiful courageous people and I hope to "see" you more.

Let me say that going on LT disability and making a big move (relocated from SF Bay area to a rural State) actually has enabled me to grow in many way, discover wonderful parts of myself, and even find my way back to a career in the arts. That's the big path I veered from because of HIV. I am engaged and respected in my community, and in many ways feel more a part of the world. And I like being an example of and HIVer doing good.

Being on LTD has also enabled me to accommodate multiple medical appointments, health issues when they arise, and time to take care of myself physically and mentally. I like to think it's evidence that LTD is working to keep me healthy vs. running myself into the ground.

Still...I have my guilt about being "subsidized." Although Goddammit the arts in this country SHOULD be subsidized. Another discussion there. And worries about retirement.

So I'm enjoying my health. But still can't quite believe I might be in a rocker in 20 years.

I like to think of it as a catch 22 situation: We have a condition that forces HIVers to look over our shoulders to see death right behind us. And even when we do not look over shoulders our status stays in the back of our minds.

Here's the thing I'm forcing myself to understand: Death is always with us, even if you do not have HIV and have perfect neatly. That is just the truth. Like you, I abandoned everything in life, excluding sex and survival, so I could live another month, (a week, a day, an hour....) just so I can move forward. So now I took have to worry about retirement, meaning developing a sustainable lifestyle until the day I die.

Retirement is a reality for a lot of us with HIV. I highly recommend saving $$, investing, and making sure you are contributing to Social Security. If you are already on disability, well, thats like early retirement.Rather than thinking about how tragic your life is, or how close death is, try looking at a future with HIV. I am almost 70 years old and have been HIV poz for 24. I just retired and, although I am not living in the lap of luxury, I am ok. I worked up till I was 67. My partner had to go out on diability in 1995. Hasnt worked since. He was lucky to have disability insurance with his employer. He makes more than I do...lol.

I know this one well. I tested HIV-positive in 1986. I was told I had less than two years to live. This wasn't up for debate. And everyone I knew with HIV was sick or dead. I planned to live as best I could but I never made long-term plans. After the two year mark, I asked my well-known AIDS doc what he thought the prognosis was then. "Another two years." Ok. I readjusted. Then when it happened after six years. He said another two years. I said, "you don't have any friggin idea what you're talking about, do you?" He sheepishly said, "No. I don't." To which I replied, "Then would you PLEASE stop telling people they are dying? People make plans based on your predictions." Yeah I was a little pissed. And I didn't say "friggin".

Now here we are 28 years later. My health has declined. I have 140 t-cells (up from 12 at one point) and severe neuropathy in my hands and feet. Every step of the way I kept planning on dying, not living. I worked for 20 years, I had a great job but didn't think saving for old age was in the cards. I was self-employed and had no disability insurance nor a 401-K plan. I'm living on Social Security Disability and a little bit of savings. I get by, but I still have no idea what "retirement" means.

I worry about living another 20 years on a limited income. But for me living in the moment means being grateful I am alive right this minute. Not future-tripping but also keeping one eye on growing old. In reality it is a little bit of each—the here and now and the future. I admit that twenty years seems unimaginable but the past 20 went by in flash. All I know is I plan to make the next 20 (should I have them) the best they can be, even if I don't know what it looks like.

In the meantime, I've started a community based website devoted to long-term survivors, planning a town hall on the same topic. Because being out and open has been one of the things that kept me sane and fulfilled. I also want other people's help in solving these problems. We are not in it alone.

You never know what's coming next!. Maybe a bear that falls helplessly in love with you, that's going to pay special attention to make sure that every day you have coming for the rest of your life is going to be filled with loving', lots of joy and happiness, and of course, at times, pain and sadness.

We are all dying. That's the easy part we all share. The hard part is deciding to live, to be fully alive, welcome in full heart what life presents to you.

That's the scary part. After so much fear and anxiety, trusting in life enough to once again let in the light and warmth.

But my experience is, it is possible to move in the direction of becoming fully alive once again. An ongoing process. And please note: If you go bear hunting, bring a salt shaker. If you get close enough to a bear to salt its tail, you got him.

Given that with a controlled viral load there is virtually no difference in life expectancy for Poz folks contrasted with Neg folks.... well time's running out for me but at the same rate as any other 51 year old who doesn't smoke, eats well and gets regular exercise.

Nice words of wisdom all. I really did lead a busy and successful life my first decade or so of HIV, despite crude meds and dire warnings. Even the first few years on LTD had ups and down, sometimes looking optimistic at treatment results, then falling back into caution with treatment failures. That's why I remained reluctant to chuck LTD out the window.

I am fortunate that in my early years I planned carefully to make sure I maintained good health coverage and always had a good LTD plan as backup. My hope for the future is that these resources aren't limited to the privileged few.

But I hope I didn't give the impression I'm living in fear or hopelessness. On the contrary, I have learned many valuable lessons through my Poz experience, lessons about myself and the world. I love my life, even the challenges, and I don't take for grated how fortunate I am to have my health, a home, a good community, and even grey hair. Not to mention the miracle of loving souls who appear and bring magic to our lives.

I am so glad that your are happy and living your life, dealing with your past issues and current issues as they arise. That's the sign of a man choosing to live his life, rather than go stale and whither.

If we were ever to meet, the first thing I would do would be to give you a capturing bear hug, to acknowledge the pain and struggles you've experienced. But more important, to hug you, to let you know that you will never be alone again. That you have a friend for all times.

We've all gone though great pain and struggles, fears, anxieties and sorrows. But these things are all just (and perhaps very necessary) shadows, giving us perspective and identity and appreciation.

Now in all our lives comes the full light that cast those shadows, so that we could actually distinguish between light and shadows of light. There is no such thing as darkness, just limitations of light.

Were I ever to meet you, my jaw would drop, and my smile be constant, acknowledging and understand the burden of your past travels, and likely, with hope and anticipation, welcome with full heart and being the opportunity to walk along side you into the future.

You are a wonderful, good man.

No rockers. No slings. We are not afraid anymore. Standing strong now.